So i'm just going to pause. The current situation. What works and what needs to change so before I continue. I just want to let everyone know that we are about to start recording the event.
So the link to this recording will be made available to everyone who registered for the event as well as shared widely on social media
as soon afterwards as possible. So just to introduce myself.
My name is Mel Romualdez, I'm a Lecturer in Psychology, based at the Centre for Research in Autism and Education, also known as CRAE, which is housed within the department of Psychology and Human Development at the IOE, UCL's Faculty of
Education and Society, and I will be moderating the discussion tonight. Just a couple of housekeeping points before I ask the panelists to introduce themselves.
I'd like to highlight the interactive nature of this panel discussion.
So, although, as attendees, your cameras and microphones will be off, we strongly encourage you to participate in the discussion through the chat.
If you would like to ask something, and if you have any questions for our panelists, please submit these to the Q&A
box on zoom, and we will address as many questions as we can during the latter portion of this event.
There's also an option to submit questions anonymously through the Q&A box, if you prefer, and before we get started I'd also like to extend my warmest thanks to the panelists for contributing their time and
their expertise here today, the IOE Early Career Impact Fellowship program for funding this event, and members of the CRAE team for supporting it.
And of course I'd like to thank all of you for being here today, and the fact that so many of you chose to attend this evening is a testament to how important the topic of autism and employment is. And now I'd like to ask the
panelists to introduce themselves and I think we're going to go in alphabetical order by surname to make things easier. so we'll start with Rahel. Yes, hi so I'm Rahel I'm
a project manager for the NDSA. That's the Neurodiverse Self-advocacy Network,
an autistic-led organization that offers mentoring and peer support programs for autistic people.
by autistic people, and our flagship program is Tool Up.
It helps autistic people into the workplace and I was also a participant in the first round of Tool Up.
That's how I got to this position. So I have experience from both sides of the decision.
Thank you.
Hi Marie Djela, I am a founder and managing director of in the NDSA.
I have a long 15 years experience in business.
Some of it was pleasant, some of it less pleasant.
So I have personal experience of many issues that autistic people face I'm also the mother of autistic children, and of course I'm autistic myself.
Hello, I'm Rose Matthews and I've spent 40 plus years in employment of various kinds, and I must be getting close to 42 different jobs now in the private public and third sectors and I worked
at all levels, from cooking pies, and you know cafes to managing NHS services.
And I only discovered that I was autistic just before my 59th birthday, which was 3 and a half years ago.
So I'm very early on the journey to adapting my employment, my career plan to the fact that I am autistic.
I'm hear in a purely personal capacity at the moment. I am working on 2 research projects that are also focused around sexuality and relationships. and I am writing a book which will come out in 2023
I hope.
Hi, I'm Pete Wharmby, I am a late diagnosed autistic myself.
I was diagnosed at the age of 30, 34 back in 2017.
I am like Rose. I'm here in a personal capacity
I am these days self-employed and a writer by trade, but I've had a long line of jobs and experiences in the workplace.
Some good, some not so good from the public sector and the private sector, and so on, and so forth.
So I'll be hopefully bringing some of that experience today. I've just finished my second book, so I'm just waiting for the the first one to be published and that's coming in September this year and the
second book will be in March next year. Wonderful! Thank you all so much.
So we are going to launch right into the panel
discussion part of tonight's session, and I want to start by asking all the panelists:
Why is autism and employment an important topic? Marie, did you want to go first?
Okay, well, employment is is you know the part it's where we spend most of our lives.
It's the way we connect. We plug in actively into society. That's also a huge source of satisfaction and validation and self fulfillment.
You know you achieve something. We are driven. We want to make an impact.
We want to contribute, and change things for the better and in employment, or you know, in any of its multiple forms is a route to this, and also because in our society that is how people's value is often judged
Yeah, your kind of your self-worth, people measure it against the employment.
And I think I found for autistic people it is just a huge source of validation.
And so a way to be part of that, a big part. Thank you.
Rose, did you want to talk a little bit about why this topic is important?
Yeah, I've had a fascination for jobs and careers since early childhood.
I read a series of books as a child that introduced me to all kinds of different jobs, and one of the things that has struck me, I mean, I think the right to choose occupations, work in different fields is a
fundamental human right. And one of the things that has struck me since discovering that I'm
autistic is that some of the things I did earlier in my career, like being a police officer in the 1980s
I suspect, that had I been diagnosed autistic,
that might have been a big barrier so I feel quite passionately that people should have the right to work.
They shouldn't be forced to work. I'm a big big advocate of the you know, the basic universal income kind of approach, because I would say that, as an autistic person speaking personally, clearly the stress and strain of working is quite
severe and at various times during my life i've had to work less than full time, and I mean HAD to.
So it's vitally important that autistic people
have a range of opportunities and aren't discriminated against. And I think in the current economic climate, the way that the welfare benefit system is operated is just so damaging to people to to not work I mean that's
a really bad idea, bad reason to have to work, but you know people who are unable to work are faced with a truly terrible situation where they can barely exist.
So you know I have worked in social work, spent a lot of my career in social care.
I'm very passionate about that as well---welfare benefits, welfare rights, autistic rights, employment rights.
Absolutely. Pete, did you want to add anything to that?
Why is this topic important? Yeah I mean much the same really I'm a great believer that autistic people, you know, will be able to fit into the workplace that it's something that's completely possible and that autistic people
can thrive in workplaces of all kinds so long as there is a basic level of understanding there amongst the people that they work with, and that's peers and employees and employers.
And I often feel incredibly frustrated by the fact that often the level of knowledge and understanding that's required really isn't that huge you know not not really not in the scale of things.
And yet we're still not there, you know we're still, in a lot of cases, a long way from that, and it feels like we could be so close we could be so very close to autistic people who are able to, having that freedom and
having the ability to, you know, earn a living, and to feel that satisfaction.
You know, and all the rest of it. but we're kept from that, by this kind of almost stubborn lack of take up of you know truly trying to understand how it is that autistic people work and and what accommodations, and
what we might need in the workplace. Absolutely. There was an article published in the Harvard Business Review some time last December, and the title really stuck with me because it was: "Autism isn't holding people back in the workplace. Discrimination
is." And I think that really sums it up and that really did stick with me when I read that and I think we'll talk about that a little bit more when we address the barriers that autistic people
face to employment. Rahel did you want to add anything?
I think I have very similar points. Employment allows us autonomy, which is incredibly important to anyone's mental health, and just like neurotypical people.
We want to contribute to society, want to contribute to the communities we live in, and we have so much to bring to the table.
It's a loss for us and it's a loss for society.
If we are allowed to do that. Absolutely I think it's worth mentioning that, you know the Office for National Statistics have conducted a survey, and only 22% of autistic people are employed.
This is even the lowest rate. Last year it was lower than people.
with learning difficulties. This year it moved up a little bit but it's still in the low places which is which is shocking absolutely.
I think, in the 2016 report (from the NAS) it was 32%.
But last year the ONS published that the figure was 22%, so that's absolutely concerning.
And I think that's a good segue into our next question, which is
What do we know about the current state of employment for autistic people in the UK and beyond right now?
So maybe Pete, did you want to answer that? Yes, I mean obviously, as you said, the the numbers speak for themselves. You know what they are. They are so much lower than they really ought to be.
And you know that 22% tells us that you know that's a story of 78% of adult autistic people who don't have that autonomy who don't have that you know and also the satisfaction.
And the independence, and the freedom to live their best life, you know, and to be able to enjoy themselves, you know, and get something out of life, and it's a I mean as far as I'm concerned it's
an absolute tragedy. It really is and it's certainly not self-inflicted.
You know through my Twitter feed and my experience talking to autistic people, you know we're open to work.
We're looking for work we're trying to work and yet also, often we hear stories of people who have been forced from work because they don't get the accommodations they need they're or ostracized or seen as
other in some in some kind of unpleasant way and yeah, I'd be very interested, and I'm sure the data probably exists in how many of that 78% not in work have been in work in the past I mean
the the fact that it's going down suggests that they were, and I think it would be very likely to see that, you know autistic people are only managing to survive being in the workplace for a certain amount of time before
it becomes untenable absolutely. Yeah, someone's just put in the chat, or when you get work, you become burnt out, it leads to autistic burnout.
Rose, did you want to add anything? What do we know about the current state of employment for
autistic people in the UK? Well as a research, I'd say not nearly enough, you know.
We haven't got good longitudinal studies tracking people through time.
It's very complicated, because there are so many variables I mean just taking myself as an example.
I'm a carer I work I have physical and mental health issues
I have to contend with, so all of these factors come into play.
So it's you know I spent most of my career, not knowing that I was autistic.
I think another angle that i'm keen to explore is, when does work work well for autistic people, because I certainly in academia, when I was in academic roles, I knew a lot of unrecognized
autistic people who have found a niche and certainly thrived until academia started, become more like the kind of business world with more aggressive targets, shared office space I mean i'm quite old.
So I can remember a time when people had individual offices in a lot of employment scenarios, where people even went home for lunch when I was a child.
Imagine that going to your own home for months. A lot of changes have happened in the course of my 40 plus years in the workplace, and I would say that the vast majority of them, with the exception of the possibility of working from
home and technology, have actually made working life more difficult, more difficult for me.
We need to know far more, far more about what works well for people absolutely.
Yeah, I absolutely recognize this idea you know I'm also old enough to remember individual offices. And I think it was in sort of beginning of 2000 things started changing and not only shared offices.
Now it's even hot desking and you know the size of offices.
Start the sharing. So you know, all the personal space shrunk the point that in one of my jobs I can hear the conversation on the phone on the other side of the line for my colleague.
So, in a terrible sensory environment, but also the emergence of emotional intelligence and social intelligence.
You know, Goldman's book in mid-90s which put huge pressure on qualities that autistic people struggle with at work.
So basically the work environment, the work cultures. There is an emergence of this perception of an ideal employee that is modeled on neurotypical people that is modeled on a particular type of neurotypical person
actually. And there is this false assumption that so everybody should be like this.
And then based on this baseline, we will choose the best, and this for me, you know, this doesn't exist because, for example, Microsoft prides itself on recruiting generally, and they lost
essentially as a race for innovation, to Apple, to Toshiba, to all sorts of companies, because they had these ideas that people who are best at selling themselves are also the best people to drive forward innovation and it's not the
case to drive forward innovation. You need innovative people---autistic people who contribute to the most paradigm shifts in human civilization.
Absolutely It's kind of disheartening to think that we might be going in the wrong direction in terms of what organizations are doing.
They're moving away from becoming inclusive. Rahel did you want to add anything to that before we move on?
So the question was, what do we know about the current state of employment?
So I would just like to add, and that even the people who are employed often often have very unusual work histories. And I think this example is very typical of what we see in our programs even the people who
have always held down a job, have moved between them a lot of jobs, and have found themselves burning out time and time again being underemployed for periods of time.
Kind of juggling a lot of half jobs and just just not ever finding the place that's really comfortable for them.
So I think even those statistics don't show the full picture. The other point about the state [of employment] is, of course, your research, Mel.
Yeah, the study you published last year about which essentially shows that there is a 50/50 chance for autistic people who disclose their autism [diagnosis].
And, you know, enabling positive outcomes or 50% chance that from this point on things deteriorate, and they're pushed out of employment absolutely.
And and you know this is the state of the game, and absolutely, you know Harvard Business Review is spot on.
It is you know I published an opinion piece a case study piece in Autism in Adulthood last year, and you know what I'm saying is that it
it depends. It depends very much on the culture which stems from senior management.
It's the senior management in the company. the entrenched medieval beliefs about disability.
Yeah, these beliefs that people, you know I sat in front of a director who told me that autistic people don't belong in the leading company.
You know, absurdities like this are very much alive within business cultures, and this is why, in in spite of the law, in spite of reasonable adjustments which are quite inexpensive for autistic people, and easy to implement
and you know people still choose discrimination by by accident.
It's like an accident happening in slow motion and it evolves towards you know the worst possible scenario, because people don't understand, because they're completely 300 operating in the paradigm of you know medieval
perception of disability as inability and kind of shame and something that doesn't belong absolutely. Yeah.
And this is something that we need to---I'd like to try and change.
So I think that also leads nicely to our next part of the discussion, which is why are autistic people struggling to find or maintain employment?
If you could briefly tell us what are the biggest challenges or barriers that organizations have created for autistic employees and job seekers?
Pete, did you want to take that question first?
I think you're mute. Thank you I think that the the actual getting of a job in the first place is is is a significant barrier that causes an awful lot of problems for for many autistic people you know that
There's 2 major aspects to that there's the application form, and the kind of arcane rules that exist in the in the personal statement that you're expected to write you know in order to or some of the kind of jobs that I used to go for
in teaching and things like that, where you're meant to kind of extol your virtues in this very particular way that no one has ever seen fit to describe
to you or explain to you in any real meaningful you know manner. So you're kind of you know, stumbling around in the dark trying to work out.
You know there is a formula I'm trying to kind of get here, but I don't know what it is, and no one will tell me what it looks like, and I think that that is a completely unnecessary extra layer
of of, you know, completely pointless difficulty that's you know instilled into the work.
Culture is, you know a key part of working out whether someone's going to be good at the job when it has no bearing on that whatsoever.
After that, of course, if you manage to navigate that labyrinth of a then you've got the interview where I mean I'm sure people will go into further detail.
But you know just alone, the idea of the small talk at the beginning of the interview, the handshake, the the greetings, the oh, how was the journey?
sets expectations that you're always looking for the workplace seems to always be looking for someone who's socially, tremendously vibrant and capable.
And so on and so forth. and there's a there's a sense that there's a kind of immediate striking out of anyone who can't meet those expectations of engaging easily in in in cheerful small talk and shaking hands I mean we
might have a, you know, serious, sensory issue with having to make unnecessary physical contact with people.
But if you refuse the handshake, with some employers that's that's the end of the interview
essentially. You know that that will be you know the decision will have been made.
And yeah, these these 2 kind of you know dual barriers.
I think, most most filter out a huge number of other very, very well qualified and very capable autistic people, to the detriment of pretty much
everybody. Absolutely! Rose, Did you want to say something about that?
Yeah, many decades ago, when I was working in one of my NHS
oganisational development roles, we did something called Hay Job evaluation training, because we were having a restructure.
And we actually analyzed job descriptions and person specifications, and tried to decide if they actually related to the job being done.
In most cases it was a very poor relationship between the two so I've read some really interesting research in the last few days about people who work in libraries.
I have worked in quite a lot of libraries myself, and that showed that if the person specifications and job descriptions weren't written by a diverse group of people, including including neurodivergent people, then they were kind of building in all
these biases that Pete was talking about, and the other thing that I would say a couple of other things about applying for jobs, I mean.
It took me took a while to realize that a lot of people apply to jobs where they don't need the criteria for them like I.
I would take it literally, but if somebody said something is essential.
I'm inclined to think, Oh, that's essential. But I've learned that
No, no, you know it kind of all depends on the organization whether that's actually essential or just a nice to have and something else.
I think that's quite difficult is that employees will often throw in like just things for the sake of it.
Like one job I was in. I was in the job for 3 months, and then I said, When will I be delivering group work?
Because the job specification said that I would be delivering group work? And they said, Oh, no, we just put that in everybody's job description just in case they have a need to.
And like, Why would you? I was quite disappointed, because I really like delivering group work, and the final thing that really gets in the way for me.
As I mentioned earlier in this discussion i've had 40 something jobs now, any application that requires me to provide a complete work history
Well immediately throws up red flags for HR type people thinking what is the matter with this person?
She changes her job constantly. I mean I'm beginning to fit in again, because the typical time in a job now is around 2.8 years.
So I don't look that unusual but early in my career.
I definitely did, and I mean, quite apart from the sheer effort of having to list every single job like when I got my autism diagnosis, I have 5 part-time and casual jobs that all started and ended at different times, can
you imagine trying to list all of that on a job application?
So I think employees need to think really seriously about what they actually need to know.
I mean clearly a lot of the jobs I do involve
enhanced DBS and security checks. So at some point they need to go back through my job history with a fine toothed comb.
But not at the initial application stage not before they've even met me, and interviewed me.
So I would just urge employees to make the whole process of application much more light touch, and to rule out things that are going to discriminate against people indirectly. And cause biased assumptions to be made. Absolutely
Marie, do you want to add anything to this? I I completely agree. You know similar points that employers should be open and actually looking for varied work
history, this conventional wisdom, a lot of sort of practices that are biased that discriminate against autistic people are also perceived to be the the good business practice, you know.
You want to. You want to recruit the best people who are best at that, you are saying, you want to recruit people with consistent track record in the career, and I think we need to challenge and challenge these orthodoxes with
with example, with role models and of people who succeed
you know, in different ways. And if you think you know there are some, you know, who actually dropped out of university.
I had a very unusual career path so it's not It's not that unusual to have an unusual work history. Absolutely before we move on, Rahel
do you want to add anything to that? What are some of the barriers to accessing employment?
It's some of the I think everyone covered the barriers to gaining employment.
But what we need to talk about also is maintaining it and that's what kind of feeds in to get the next job right?
Just like Rose mentioned, because you keep losing the last job and getting another one, and it looks bad on a CV.
And a lot of that is because workplaces are so badly suited for autistic people like the all these sensory issues.
What we talked about before before the open offices and hot desking, and all of that.
There's often a lot of noise a lot of chatter and kind of changing between the---expectations that you can change between tasks immediately.
Whenever someone comes to ask you something there's an expectation for social interactions.
That's a very typically kind of oriented a lot of small talk a lot of kind of you know, like in the street talk and just a lot of unwritten expectations, unsaid
expectations that aren't in your job description. So the other side of having too much in the job description is also having not enough that that to them, because everyone knows that of course, we often don't know absolutely.
Yeah, Marie? The so-called hidden curriculum, where you you don't know, you know autistic people as the last to know office politics and the latest gossip, and the underlying kind
of political currents. And we need mentors and buddies, and the real ones.
Yeah, not the formal ones. I was in one of my jobs.
I was appointed for a mentor the director, who was also the person who would evaluate my my performance.
Now that's not the mentor you see that's, you're not going to be openly discussing your difficulties, and you know, asking advice.
All you do is sell yourself. So yeah so I'm going to pivot a little bit.
So we're going to talk a little bit more about maintaining employment in the workplace, and, as you know, a lot of my research is on disclosure.
So just to talk about disclosure, and how unpredictable it can be.
What are some of the difficulties surrounding this? And would you advise autistic people to disclose the diagnosis in the workplace if it will help them obtain
these adjustments, but someone in the chat actually just put
(and I love this) Thank you, Stephen, for this, he said.
Adjustments and accommodations are the language of apology. I prefer to call them equitable requirements ---which I absolutely love.
So Pete, what do you think about this, should autistic people disclose?
Sorry you're on mute again. Sorry i'm hopeless I think everyone has to take the situation on their own merits.
I remember, you know, way back when I was quite kind of, you know, keen and pushed the idea that yes, you should disclose, you know.
Get get what you deserve. You know and but but for the last few years I've been more and more aware of the fact that it's actually so it can be a very very bad idea to do so you know depending on your
circumstances, and depending on who you work for, and and their level of prejudice.
I feel that everyone needs to take their time and think carefully about how they go about doing it.
I was a teacher when I when I disclosed to the world pretty much, and I was very, very naive and very open about it, because I believed that that was the right thing to do.
You know, I believe that telling the truth and being open and you know saying, yes, i'm disabled.
I'm autistic was the right way to go I look back on that now with regret.
Personally. I feel that that was in large part a catalyst for why I am now no longer in teaching.
So, so my advice would always be to be very careful, and to take every case on its merits.
Because I think that there is a an unspoken, often subconscious prejudice of low expectation.
I think that can seep into your employer's view of you when you disclose that you are either autistic or, to be honest, any any other kind of disability.
Marie, did you want to add to that? Yes, I think you know low expectations, not taking people seriously.
And time of this. Yes, we we've seen this in 2019. We did the survey on the forum of National Autistic Society. And about half the people have this experience that once they disclosed none of the kind of their value wasn't
recognized, so their achievements weren't charged with the same effect, while the disadvantages were always magnified.
So you know, another thing, I think, another factor to consider when disclosing is
it tells the employees where to look for faults. Yeah, it is so.
If if the attitude, the culture in the company is prejudiced you know by disclosing, you make it easier for the employers to find what's
so, you know, to to set you up for failure.
But then this begs the question: Would you want to work for this employer, anyway?
And how do you navigate your way out eventually? We all want to end up in fulfilling employment where we can bring our best selves to work.
Be ourselves right, unmask and feel free, and contribute to our best.
And, you know, finding that employer is is not easy. In our research
we identified, you know, these 3 factors associated with the outcomes of disclosure, and they were an understanding of autism--
that's for the colleagues and the employers themselves---willingness to make adaptations, which you might refer to as adjustments or equitable requirements, and the biggest one is organizational culture because that seemed to you know
trickle down into how hiring managers or supervisors handled requests for these equitable requirements.
So Rahel we've talked about you know sort of the the negative outcomes of this disclosure.
But do you think there could be possible positive outcomes as well?
Absolutely. We discuss this very regularly when I mentor in groups.
Because we have we have support groups for the mentees as well as our one on one mentoring and
it's almost a very complex question, but we do recommend that if you disclose, do it in a positive way.
Plan carefully. Make sure you know why you're doing it and what you're bringing to the table when you disclose.
I'm autistic that's why i'm so organized.
That's why, you know pitch it carefully but it's it's it's kind of it feels sometimes like you're making it a bit black and white for employers.
But sometimes that's what you need to do right you need to kind of almost sell your autism as a like.
This is what I need to. This is what I need from you to be a better employee.
So my for the for me, including my autism, to work for you better.
And yes, it can be, it's kind of weird for people
We recommend that people go very well prepared. Contact Access to Work before you disclose.
If you're unsure of the response, come with your homework. Know what you are asking for.
Know how you know it will be financed. Access to Work is great so talk to them.
But no matter how prepared you are, you can't guarantee a success.
So. Yes, and I think one other part of this is to be able to disclose
often you need to have a clinical diagnosis and as we know it's really difficult to access.
That's thankfully less true now. Access to Work don't require a clinical diagnosis and employers aren't allowed to ask for one so it it's it's used to be a bigger value than it is
now, though of course, some employees would ask anyway, you know not being allowed to ask.
Doesn't mean this hasn't happened. Yeah it's always a difficult decision.
A lot of, and a lot of the larger companies these days have neurodiversity networks.
Those are really really good places to go, to ask for advice to kind of figure out the organization to see if you're likely to have a good response or not.
So, Rose. we've been talking a little bit about difficulties
in maintaining employment and I wondered if you wanted to share: What are some of the biggest challenges that you personally have experienced in the workplace?
Yeah. And just going back to the issue of disclosure that actually, that actually impacts on difficulties in the workplace I found.
So in in one of my recent jobs. I really didn't have a choice about disclosure in the sense that I had a long period of burnout around the time that I had my autism assessment.
So we knew, to explain, to explain my absence from work
I needed to tell the employer why I took extended leave, so I decided to disclose to occupational health that this was connected with autism assessment, and my discovery that I was autistic.
And the difficulty then was that they decided that a full extra risk assessment was required before I took up really quite an ordinary kind of role, which I felt was very discriminatory and prejudiced because in a
previous life, I'd done similar work as a police officer there was nothing about getting an autism assessment that meant anything about my abilities or my perception or anything about that had changed. So I couldn't see why, suddenly
they required all this extra layer of investigation, and it was the most unpleasant experience. I created a long thread about it, and it actually resulted in the start of my employment being delayed by several weeks having to have
a separate induction to the other person who started, and it actually set off
Set me off on a really bad in a really bad way so I think sometimes what's happened is not necessarily just the disclosure, but for other reasons, what people sometimes call onboarding doesn't go at all well, you know the kind of
induction phase, the kind of getting to understand what the role is where your desk is.
I mean in one famous example, when I worked for a university, I was only there part of the week, and they showed me this desk right?
So they just kind, they said, this is your desk. so I personalized it.
I found some old tea bags and bits and pieces.
I put them all in a box and put them to one side, and nobody told me that somebody else it was somebody else's desk as well.
So when the other person came to work, they found all that things have been shuffled into a box under the desk.
They were clearly upset, but nobody took the time to explain.
Or this is your desk. It's also so and so's desk, and you know, there are assumptions that I would somehow intuitively understand this and a thing that has caused me the biggest difficulty apart from
microaggressions and unpleasant behavior, and and believe it is the thing that caused me
the biggest difficulty is the fact that when you begin a job, you have to sign all those forms to say you're going to stick to the policies and procedures right, and then you find out that some of the policies and procedures.
aren't stuck to at all. Not only that but if an accident happens, you write it in the accident book.
You may actually get into trouble. But, following the policy which says you must write accidents in the accent book, and your manager say, well, why did you do that? Why didn't you just phone me up?
Well, because the policy said I had to immediately write it in the accident book. That's what I did, and and this has perplexed me.
I mean this is maybe why I've done best working in situations where policies and procedures tend to be followed more because it's a complete mystery to me when they have to be and when they needn't be, and what local
practice means you know it's it's perplexing and bewildering.
Difficult. Pete, did you have any similar experiences when you were working in different settings?
I I I must admit that what Rose said there about the
the policies just being a kind of, I don't know what they are like, like just covering their tracks, I suppose, or something, and not being followed in the slightest is something I recognize very very well and it's absolutely
infuriating, because you know you're trying to do the right thing, And you keep getting told, and finding out in these new and exciting ways how you've not followed the rules, because you followed the written down rules you know the ones that are
actually set out in in legalese, you know jargon, but you haven't followed the real rules which are those unwritten, hazy kind of vague things that just kind of seem to exist in everyone's heads and it's
it's it's a barrier to everybody I mean it's a barrier to autistic people
obviously, but it must be a barrier to everybody else as well.
I mean. Surely no one is at their best in that kind of environment.
Certainly, I mean. One of the most difficult things I had to deal with was very much related to that, and it was to do with sickness
absence procedures and and the fact that workplaces, schools, councils, those kind of you know, public sector workplaces will have very clear rules and stipulations about how much time you're kind of allowed to have off
sick in a one year period, you know you, you are, for example, are allowed to have 10 days of sick leave, you know, before questions start to be asked, or before triggers start to be start to be pulled, and and the discovery that
though that 10 days rule exists, when you start to creep towards it
6, 7, 8 things already start to fall into motion and start to go wrong, and and and and you're as an autistic person
you're sitting there following rules knowing you know well, I can I can have this, you know, day off this awful migraine, because I know that I've got a day left on my you know on my line if you like only to find
out that actually, your boss is really angry with you because you've just had more time off than they're comfortable with.
Then they're okay with and you know we're ignoring the policy completely. And that was an injustice that I simply couldn't stand, you know, because I wasn't taking time off for for jollities, you know, or for fun
I I I have chronic migraines.
I have probably a migraine a week, you know.
Sometimes it was a necessity and to find out that you're being penalized and viewed in a very very negative way, for something you cannot help, even when you're within the policy guidelines, is is heartbreaking to
be honest, you know, for someone who doesn't like to rock the boat, for someone who doesn't want to upset people.
It's absolutely awful. Yeah, it must be so frustrating when you're following the rules.
But then there's this extra layer of unwritten rules that you're expected to know, and it seems like everyone else does.
And again, yeah, you're penalized for that. Marie,
are you comfortable sharing your experiences in the workplace?
Well one of the things. so my first kind of encounter with human resources, and what's the one I didn't know in that my my director had diagnosed me.
He decided that I was autistic. He didn't tell me, I didn't know anything about it.
He told that to everybody in the office, and they even assigned an English teacher to me in order for me to speak without anxiety in my speech, as if it was going to help, and of course, the more the English teacher was working the more
anxious I was becoming, and the more my speech was kind of, you know.
It was completely cross-purpose you know so that's something else to think about, that you know. If you don't disclose, and I didn't know.
I must admit I I it was a long time ago.
I didn't know anything about autism and even my autistic daughter was diagnosed
a few years later. So it was my very first encounter, and the only way I found out about this is that I had a you know I was friends with one of the colleagues, and a few years later we met and she told
me that, and which was completely shocking and traumatizing for me at the time, because I felt that these particular employers had set off napalm behind me
You know, napalm behind me, and I was running, and I was still running when when I resigned, because I just realized my mental health is is going to take its turn for the worse.
Thank you for sharing that. Rahel, do you want to share anything
before we move on from this question about the experiences that you've had in the workplace? Oh, I have a bit of a different experience for most people here, although it's also a type of a
a typical experience, especially for autistic woman. So I I went through a Bachelor's and a Masters and you know I'm very over educated, and and then I had children and autistic women tend to
have autistic children and their autistic children tend to be high needs.
And I ended up not working for a number of years and feeling that there was this mismatch between my degrees and what I could do with my experience.
And coming against trying to find jobs and coming against those essentials of experience, and not even trying because there were.
there was so many, and they never had anything for working online before
COVID, which was not a very, very positive experience, especially with an autistic child in the background, who wanted to be attached to her mother at all times.
So yeah, this this the sorry I'm very lucky in the way that my way back and has been through an autistic organization.
But What they see is often women who come from a very similar place.
Kind of being out of the work place for so long a period of time trying to find the way back and and not knowing what to do, not knowing where to start
And it's kind of something that we talk about about a lot in general terms. But I think for autistic women,
specifically there's the added issues of parenting being so much more challenging and challenging differently and
the juggling between everything being hard, because of the demands on your attention and time.
So we've talked a bit about the challenges people might face in the workplace.
Barriers to employment, to accessing and maintaining it, and also the current state of employment for autistic people in the UK.
Which is bleak to say the least. But in this last part of the panel discussion I wanted to ask, What can employers do to support their autistic employees
better? You know, if we talk about adjustments or equitable requirements, what are some common requirements that employers can put in place for their autistic employees?
Pete did you want to take that question first? Well, if I may.
Sorry Pete, before we even ask employers to do something, I'm working with employers now I'm providing training to employers about
neurodiversity at work. And what I see, there is a very low uptake.
Okay, I think there is a problem with employers' lack of confidence in dealing with disabled people in general.
Yeah, as well as with autistic people, There is all this build up of layers of myth and stereotypes that all go against this conventional wisdom of good business practice.
And I think, before we really achieve success and employment for autistic people, we need to change the narrative.
It's not enough to ask for reasonable adjustments, find reasonable adjustments through Access to Work, that's all good and necessary.
But I think we need to change the narrative about autism from deficits and from this narrative that people, you know, poor social skills, no emotional intelligence.
No, you know it's all untrue yeah a lot of us have very strong empathy and are excellent communicators, and have huge contributions to make.
I think we need to be very careful to to emphasize strengths, because I'm I'm personally very wary of the narrative of or autistic people have good attention to detail because it's not
the mind, you know. Wheelchair users may have strong arms, but this is not why we employ them. It would be one of the you know conditions
If it comes with our disability. But it's not the reason why we employ the autistic people. They are problem solvers.
They are out of the box thinkers. they have pattern recognition and specialist knowledge.
There are a lot of other skills and very important relevant qualities and autistic people have that
we need to emphasize, to make. We also need to put the neurodiversity paradigm
centre stage---validating and normalizing the state of being different.
Yeah, making it acceptable and desirable. We have a diverse team where people, autistic people can't be themselves start masking desperately, you know, and be driven to shut down, meltdowns and burnouts. Absolutely. Pete
what did you want to add to that? What can employers do?
I mean I think that's exactly spot on you know, that there has to be, all else is just you know, putting sticking plasters over this bigger issue.
You know, if we you know we can pinpoint
oh, well, you know, so some workplaces might, you know, find it within themselves to allow autistic people to work from home.
Others might not. You know all of those things are just going to be
you know little tiny assistances that are you know helping the symptoms, but there's no addressing there of the real, you know
huge elephant in the room, which, as Maria said, is, is this lack of tolerance of any kind of difference at all.
You know, a complete lack of ability to handle the fact that there may be people who work and whose minds operate in this very different way.
The only trouble is, of course, that you know changing that culture is the work of generations.
Probably I mean i'm being pessimistic but it's not the kind of thing that we can reasonably expect to happen quickly
unfortunately, so I suppose what we need to have is this kind of dual level kind of adaptation going on where where we're working to change the overall culture.
But at the same time making life a little bit easier for those who live in the here and now who still need to be able to, you know, earn our living. And I mean I don't want to dominate things. I mean I'll just give a
few ideas, but there are lots and lots and lots I mean for me.
I think one of the biggest was the working from home shift, which is actually a very big paradigm shift generally.
I think you know, forced upon us by COVID, one of the very, very few positives, in in my opinion, although it feels a bit kind of strange to say, that of the experience of the pandemic because I feel that the
given, given the general, and and you know a fairly common autistic love of routine and of avoiding change where we can, in order to maintain our kind of sense of control over things.
Because otherwise, things get so stressful. The being able to stay in our own home and to do work remotely is an absolutely gigantic bonus, you know, really is a game changer, and yet we're not seeing necessarily all
workplaces embracing it as a possibility and I still know that some autistic people are still forced into the office, even when it's not required.
And so I feel very strongly that you know, working from home as a kind of almost base level adaptation for any autistic person who wants it would would be a very, very, very good start
Yeah, yeah, absolutely. Rose do you want to add something to that? Yeah, I mean, I've got very mixed feelings because I know they're---I'm not alone amongst autistic people and being somebody who actually
enjoys going to work. One of the difficulties that I've had is that if your office space was inhospitable being told well, you could work from home. But I don't want to work from home, I want to be where everyone
else is. I just want to have the conditions there met.
So I agree with Pete that it has been a game changer for a lot of people, but it shouldn't be a get out clause for people to say, well, we don't need to adapt the office because you can work from
home when other people don't have to. I think that my son, got his---he
had an autism assessment a few months, weeks after me, in the reversal of the traditional way where mums tend to get diagnosed
after their children. We were the other way around and he's in a very, very dynamic, interesting phase of his career, and I kind of promised him that things are changing are changing quickly, because we can't let them go
grind on as slowly as they're going, we really can't, and I think something's happening because there are a lot of people at my kind of career stage who are getting assessed when they're in their forties fifties and sixties and so
on, and some of us (not me so much) I mean my influential career years are well gone by now. But you know some of those people are still in in influential positions, and I hope that they're gonna exert all the influence they
can bring to bear to change things quicker. And I also think that the younger generation of autistic people moving through have ways of understanding themselves, ways of understanding the world, ways of looking at things.
that I've had to really work towards. I mean in spite of me thinking about getting an understanding that
I'm autistic is is an entirely positive thing for me, I've had to grapple with kind of internalized ableism because of all the messages I've been fed from when I was a young child about what being
autistic means, and even today, when I was preparing for this, I got out my autism assessment report and read it.
Every time I read it I have to immediately read something else all about my strengths and abilities and achievements, because every time I read that autism assessment report it makes me think, how was I ever a police officer? How was I ever a senior manager? How did I
do that, you know it should be impossible, based on this description of my limitations and deficits.
So we have to shake the whole thing up from how people discover that they are autistic.
What they understand by that, how organizations understand that it's a massive thing.
But we absolutely can't allow this to go at a snail's pace I mean it's the rest of my life's work to make sure that things speed up because i've been very fortunate somehow or other I muddled
through and stayed in work mostly, but I know somebody well,
a young person who has, he has the first degree he has a Master's degree.
He has never had like a substantial proper chance at employment. And that's not, like we've said, for want of trying, you know.
He's tried and tried and tried and it's just I think it's just outrageous.
It is truly outrageous and I can't understand why the rest of the world isn't as outraged by it as we are.
So i'll be quiet now, because i'm getting really... That was wonderful.
Thank you so much Rose for sharing that, and I absolutely agree.
Rahel, did you want to add something? You know what can we tell employers? What would you say? The first thing, like everyone else said, is they need to---
The understanding needs to shift, and right now we maybe can't make the big shift happen.
But we can make the small shifts happen and that's enough---a lot of things, and and the research shows that, that just a little more understanding of autism makes a big difference for the
employees, and the, all the organizations and companies that will give workplace training.
We do, but a lot of other organizations do the same that will come to an organization, come to the workplace and give our training to the managers, to the co-workers.
In the UK, it can be financed by Access to Work.
So this is maybe somewhere between, you know, the small accommodations like noise-cancelling headphones and the big social change.
It's just a little bit of education that goes a long way, and the other big thing is flexibility.
Because just like you could see between Rose and Pete
some people want to work from home. Some people want to work from the office.
Well not being statistic doesn't make a smaller list and just opening up, you know.
Don't say no it has to be that way because it's always been that way, open up to see what is possible because autistic and non-autistic people work better when they have more control over the working environment. That's true for all
of us. Absolutely. Yeah. Well, I I like to say that we're often
canaries in the coal mine. We are bothered by things that are really not good for anyone right?
Too much noise, too much colour, too much input, it's not good for anyone.
We just react faster. Absolutely. Marie, when you work with these organizations, and when you're trying to train employers to be more accommodating or to be more inclusive of
autistic people, what do you say to them? You know, what does the training involve?
Well, we talk about neurodiversity as an important and valid part of the human condition, and the contributions neurodivergent people make.
And how essential and important it is for innovation, for diversity of thought.
And how it is contributing not only to the bottom line, but also to to the employees' satisfaction, employee engagement.
It increases the morale of the whole organization, and certainly it enables them to be more innovative and more responsive to the fast changing environment.
If you think about the last few years, we had Brexit, and we had COVID, and you know, huge adjustments for businesses.
Now there is the war, and you know there are huge things.
Volkswagen is buying boxes of TVs to extract the microchip which they install in their cars, you know. Crazy time, crazy things.
You need a non-linear thinking. You need outside of the box thinking and innovative solutions.
I think we autistic people, we don't filter our thoughts and interests by how other people will react to this.
It's not our first criteria. We are interested in this fascinating thing,
we want to learn more about it and make it work and see how we can use it.
And you know we just need to be you know ourselves.
Bring our best selves to work. Without the need to mask and adapt and pretend to be normal. Absolutely.
So last question before we move on to audience questions, I see that there are a few in the Q &
A box that we can move to after this. But are there any organizations,
or do you know of any, you know, cases where organizations are actually doing things
well, and it's working for them and it's working for their neurodivergent employees? Do we have any examples that this is absolutely possible, because it is, but I feel like having those examples in the real world will really help to move this
forward. If we can tell companies like look how well it's working here.
Maybe we'll start with Marie since you do work directly with organizations.
Well, I I wish I had more examples. I know that you know I've been attending the NAS employment conference, and Ernst & Young seem to have been quite a good place.
You know---they really, one of the things that impressed me, one of the sort of leaders on including autism at work, said that they stopped recruiting for fit.
So in their recruitment process. they don't assess fit into the organization, and that's huge because that's where most of autistic people get stuck.
Yeah, we we are different. Another organization, often mentioned is Auticon.
But you know, there, the model is that they let autistic people do the work.
But the neurotypical people handle client interaction. And I'm sure there are huge advantages to this, and it works for the autistic employees.
But there is a broader question of whether that's right, because it doesn't force the clients to adapt. Yeah, it doesn't force the clients to be able to communicate with autistic people and include them it kind of ghetto-
izes us. So I don't know, what i'd like to see is that there is a broad push in society in understanding neurodiversity and autism rather than focusing huge you know, big charities focusing their programs on organizations such as JP
Morgan, Morgan Stanley, you know, organizations that already have plenty of resources.
Yeah, to to make diversity and inclusion work, they don't need charitable input
I feel. I don't know what you think Pete about this.
I think you're on mute. Honestly I have had a long day.
I get the sense that there are lots and lots of of organizations of every tier which is interesting who are who are desperately wanting information, and and to learn about the autistic experience.
You know, from from autistic individuals, you know, wanting talks or training, or whatever it might might consist of.
So you know, you know, large scale companies like I've spoken to organizations like Lego and Capita and Exertis,
you know these big kind of multinational corporations, right down to, you know, like local, really small businesses who, you know, want to
who want to learn and that is a source of hope.
I think you know the fact that it is a very widespread desire to find out and to learn and to understand. I think that's a really positive sign of where things might be going and as Maria
said, it's a move away from this kind of you know the, you know, like autism charities spoon feeding information to everybody you know, who wants to hear it. Instead
it's a more grassroots thing where autistic people are being asked.
can you talk to us about your experiences, so that we might learn from the you know, from the horse's mouth?
As it was. And I think that's a very good thing. The one trouble is that at the moment it does feel still quite minor in the grand scheme of things, you know where there's an awful lot of businesses out, there there's an
awful lot of organizations out there, and I still feel there is a way to go.
But the seeds, I think, are there but as Rose said, there is no time to, you know, to
take this slowly, slowly, slowly. You know it has to be quicker, you know.
So. So yeah, those are my thoughts. Absolutely it feels like there's such a sense of urgency that people should have, because this is what people are experiencing right now.
It needs to change right now, and it's just not changing fast enough yet. Rose, do you want to say something?
Yeah, I'm bursting to say something. I mean my career was in learning development for a lot of years, and one of the first things we did when people came to us saying they needed some training or learning input was to work out if that
was actually what they wanted or needed. And this was in local and regional government, and quite often they thought that what they needed was some training.
But actually they needed to look at their systems and processes.
And and one of my passions is thinking, you know, a lot of stuff that organizations do
I hate to say this, but they have what they call training but it's actually infotainment.
They get somebody personable to come and talk to them about being autistic, and they have a lovely afternoon and tea and biscuits, and they go away and think,
this is great. This is lovely. And I know it happens because when I queried some of the workplace practices that I was finding to be a barrier.
I was told, well we've had autism training! They said, you seem doubtful. I said, well, only in the sense that if you've had autism training I would have expected you to understand that people's experiences are very different so that
the first thing you would begin with is asking me what works for me rather than telling me what you've been told should work for me. So I think it's a very dangerous thing and what I would say to companies of small, medium, any
size you have, if you're anything other than a kind of 2 or 3 person operation, you almost certainly have neurodivergent people already employed within your organization.
Why wouldn't you make it possible, even anonymously, to hear what people who actually work in the organization think about working in the organization as a neurodivergent person.
So I'm a big fan of 360-degree appraisal, exit interviews, anonymous surveys, all kinds of mechanisms, people being able to say how it is because, although I could go into companies and
talk eloquently about my career experiences I don't know what it's like to work there.
I haven't done it, and those people there are doing it. So my son works in a big company, and they've started doing things like podcasts.
I think what's fantastic is after he did a kind of webinar, podcast thing about his experiences, other people in the organisation contacted him, and said they felt more safe and secure about being able to
disclose they were autistic. Having heard him speak, and realizing that senior managers are autistic and openly autistic at work.
And I think this is the kind of culture shift.
And I think a last point is we need to make sure, and I saw this in the chat
that progression isn't a narrowly defined thing about having to take on a lot of direct reports and my management responsibilities.
I've been a line manager it's not something I particularly enjoy doing.
I'm much more project and task focused, but I can line manage.
But I would prefer not to and I think that for a lot of people, they need to be given a choice about how to progress and achieve seniority
that's not limited to one way of doing it. The traditional routes to
promotion are quite narrow and closed off and I think if we're really gonna change the culture
we need to get neurodivergent autistic people at board level, and they are already.
But a lot of them don't come out you know in the most senior influential positions.
So it's kind of a bit of one, a bit of the other, changing the stigma, changing the prejudice, changing all of that stuff, but also making sure that people can progress. Absolutely and I think that relates quite
closely to one of the questions that we've we've had from one of the attendees, and I'm gonna direct this toward you right now.
How can we support effective self advocacy re: our autistic needs, and use our personal voices to create ripples of increasing understanding, as and when we can?
I think the key here is to use what relative power we have. So if you're in a position of any relative power, as small as it is, use that, right, assess where you are in your social life, family life, work life, community
life, and find in which relationships you have a little bit of relative power, and it doesn't have to be huge.
It can just be influence and put your effort into those. Don't start trying to convince everyone about how great
neurodiversity acceptance is when you're starting out as, you know at the lowest level, in the company. Find the places where people look up to you. Again, even a tiny bit, and start the talk in those places and be the role model for those who
aren't in a position to talk and to push and to advocate, and in the position--- in the places where you're not in that position,
protect yourself, and let other people do the work. Thank you for that
answer. We have another question here about promoting understanding of the double empathy problem.
And I'm wondering if I can direct this to Pete.
How can we promote understanding of the double empathy problem and relevant solutions in order to widen other people's understanding of the strengths we bring, and recognition of how they can address the barriers that prevent us from playing
to our strengths. Well, I mean obviously you know fundamentally it's an understanding point. You know that they need to understand that
that there is not this deficit you know that lands purely on our shoulders
you know that it isn't just our problem, if there is some kind of communicative difference, or challenge in place that you know that that responsibility has to be shouldered by everyone involved.
Because you know that's Dr. Milton's you know, major point there, that you know ultimately you know it doesn't all fall on as a responsibility of the autistic people because communication works both ways
I think you know in order to raise understanding of that it's just purely logical.
I mean, you know, when you think about it well when I first read about it, I couldn't believe that I hadn't considered it myself, you know, because it feels you know, in retrospect so incredibly obvious because as with all things
communication involves more than just one person. But getting that information out there is difficult, because you know as widespread a theory and as widespread and well understanding a concept, I still find that there are plenty of people who have
got no awareness of it whatsoever, who've never heard of it, who aren't familiar with the content whatsoever---even autistic people.
So. So there is a real problem there of you know getting that information out there in ways that people will be able to hear.
And that's where you know people who work, who do things on Twitter,
and do YouTube videos and all that kind of thing, that's where you know that can be useful.
But it's only ever gonna be a very spotty kind of coverage, you know, because then no one's got that kind of reach.
You know that it gets everywhere. It almost feels like it has to come from some kind of central space.
But to be quite honest with you, you know I mean that would suggest government.
But these days I'm not entirely sure I would trust them to deliver that information.
Well, but it does feel that it has to come from, you know some sort that has a tremendous reach. And I think that's where the media comes in.
To be quite honest, because, you know, obviously, nothing has a greater reach than the mainstream media.
But representation in that for autistic and other neurodivergent people is poor, very, very poor indeed, and it seems to be very difficult to change that.
So. So yeah, I'm afraid I haven't really given an answer to that because it seems like a very difficult problem to get that level of understanding of something quite niche, I mean it shouldn't be niche, but it is to such a wide
you know, number of people, but I feel like you know the media holds the key.
I don't know. Maybe other people have got some amount of insight there.
Thank you so much for that, Pete, and I agree, it
almost seems like the DEP is so obvious and it should be so obvious to everyone.
And we're so entrenched in you know Twitter and the academic community and the community of people who do advocacy work that we feel like it's obvious to everyone but yes, actually it is a very small group of people who
have actually been introduced to this concept. I've got a question for you, Marie,
from one of our attendees asking for advice about a new employer, and Natalie says, with the opportunity for a blank canvas with a new employer who has recruited me for a specialist autistic educator
role---what is the most ambitious and radical thing I could ask for, to shape better practice for me, and those who come after?
Oh, that is an excellent question. I don't know if I have a good answer.
You know, if you disclose, have a very powerful positive [message] that describes how autism makes you the most effective and the best person for this job.
And how it enables you to achieve, you know your best, to be huge achievers that you are.
I think you can change the narrative of autism.
Shifting the discussion to strengths. Yeah, by emphasizing the strengths and achievements of people who are being educated. I don't know whether it's a role that involves teaching autistic students so is that the role
of teaching about autism. But I think the most important thing is to emphasize and normalize the difference, which is just a different way of processing information, of being in the world.
It is a valid, normal way, which is absolutely essential to human diversity.
Thank you. Thanks so much for that, Marie. And now Rahel I've got a question for you.
And it's about autism training. Is there a risk that when articulate autistic people present autism training, those attending will assume that all autistic people are the same way?
How do we help those who have little language or more obvious disability into work?
Yes, of course, there is that risk, and the only way we can counter that risk is to have more voices,
not less. And there are some fantastic autistic advocates who are on social media who don't use spoken language but use written language.
There are some fantastic speakers and writers who use spoken language sometimes, and speak about that.
You can't speak for people who don't have any form of, of course, communication.
But you can try to help them speak right. So a lot of people have, a lot of people have kind of you know, have times where they are more able to speak, or let's say they have channels of communication with some people who understand better and as
long as you don't try to [do] all of the speaking for them, but try as best as possible to translate to enable them to come forward.
I think I think that's that's what we need to turn to
We really need a large diversity of voices so yeah we shouldn't stop talking.
We should bring with us as many people as possible. Absolutely. Thank you, Rahel.
Rose, I have a question for you. Someone has asked if the panelists could talk about executive function and/or balancing employment and other life demands.
And they said, I struggle to keep up with basic life maintenance tasks and can't imagine how I would handle a job on top of that.
Yeah, that's certainly something i've had a lot of difficulty with at various points in my life.
I mean, I put some of my career success down to the fact that I was in relationships where my partner was able to take over large parts of basic living stuff like buying food, you know, child care.
I really couldn't couldn't do it all. I think that the more I've grown to understand myself, the more I've realized how a lot depends on the ability that I have to schedule and pace and manage and factor in
recovery time. What I was doing earlier before I understood about my sensory issues and about my social
exhaustion was I didn't understand why I needed recovery time. So therefore I didn't allow myself it, because I couldn't see that other people needed it and often it would manifest itself
like when I went to a conference I remember just not being able to find the evening meeting.
I literally couldn't find it physically, couldn't get there, and had to return to my hotel, not having networked with the people I was supposed to be meeting, and I thought afterwards, actually, this was my brain just shutting down and
saying, you know you've had enough. And these days when I look at events, I have to think very carefully which parts of this can I do what will I need to do differently to enable me to
manage this. Like today. Today I've been this morning doing work primarily non-speaking, in a fairly long meeting before this session doing some speaking, but I thought really carefully about what else I was doing today, what
I'd be eating, clothes. I mean it just sounds like you know, I have to plan everything basically. Now I understand that to keep well, to keep up work, to survive
I have to put a lot of effort into planning things, and I have to ask for help, and my partner has to understand.
But if I say i'm feeling overwhelmed they now know how to respond, what to say, and what to do.
So I went through a very bad phase immediately after I discovered that I was
autistic, was having an awful lot of burnouts and meltdowns and shutdowns that I've kind of come through that now, and I would say that with executive
function, it's a lot to do with not overwhelming and overloading yourself. Like it's just so much better for me when, like we had a pre- meeting
so we knew the format of tonight, what was gonna happen,
we met each other. Like all of these things, it's reducing the unpredictability, it reduces the stress and the demands.
So anything that you can do to improve your knowledge and understanding of yourself, your environment and enlist help from other people, I think, is the way forward definitely, for well, from my perspective, that's what's worked for me and it
doesn't always work. I'll still get overwhelmed but then I don't blame myself for that, I'm very kind to myself.
I'm very understanding of myself, I don't feel any shame whatsoever.
Okay, thank you so much for that. Marie, did you want to say something?
No, I absolutely I couldn't agree more you know, forgiving yourself.
Basically, you're juggling manuals and you need to know.
You allow yourself to choose which one you're gonna drop without any sense of guilt, or you know, bad feeling because as essentially these balls that you're going to choose to drop eventually are the ones that drain you the most and by choosing, by
focusing on the balls that you can juggle,
you are actually, you know, working to your potential. It brings you positive energy.
So there is a reason why you can't juggle this ball so be selective.
We've got one last question before we end and I'm gonna ask you, Pete.
This is an interesting one. Is there any merit in considering what we mean by work that is, thinking creatively about what that can look like in a way that plays to a person's strengths, passions, and preferences?
And I think you know in some ways all of the panelists here today have done that.
Could you speak to that a little bit? I think I had a very rigid idea growing up
of what work was meant to be and I'm not---I couldn't really tell you where it came from necessarily.
I mean I come from a fairly working class background, you know a mining town in the Midlands.
But I did have a very strong sense that work was meant to be exhausting
and hard and not something necessarily that you
were meant to enjoy. And I kind of lived all through life with that kind of set of expectations and I think that that's not necessarily something that that is very rare. I think that especially
in in the UK and I think to be honest in in the US
as well, there is a very strong sense that work is good for you, and it's important and is empowering.
But it's also hard, you know, it's something that is there's a challenge and it's meant to test you, and it's meant to to wear you out you know and for me as an autistic person who didn't know I
was autistic, I can relate very heavily to what Rose was talking about. Because of that I felt like a failure
all of the time because I couldn't match---I couldn't meet that challenge. I couldn't meet that expectation.
I just couldn't do it. Yeah the Protestant work ethic. I couldn't manage it, and that leads to a terrible self-doubt like, you know, a source of constant misery because I felt that I was never up
to the task. I was never up to the standard that was required, even though no one had ever actually set a clear kind of unambiguous standard.
And I think that that was hugely detrimental to my kind of sense of self until I got diagnosed, because the moment that I got that extra bit of information about myself, and I could actually start to see why it was that perhaps I was
struggling to meet this expectation. I was suddenly able to be, as Rose said, kinder to myself, more reasonable with myself, and to give myself the break that I needed, you know, after 30 odd years you know, that there were
times in my twenties in particular, where I I almost hated myself for being so
rubbish. That was an awful word. But you know, for being so disorganized, for being so unable to handle the sensory issues that I was bombarded with, for not being able to cope. There was a real issue there with you
know self-respect. Now I can be kind, and now I can understand myself.
Now I can allow myself, and I think that the move that I made of quitting teaching because, though I enjoyed it, it was, I think, killing me slowly.
That was the biggest manifestation of that, and trusting myself to try to make a go of writing, you know, to try to make a go of getting words on the page of communicating as a job. But the thing
is, the ghost of that old message that work should be hard and physical and tiring has never gone away.
So I still spend some days feeling terribly guilty about the fact that my working day may well have consisted simply of sitting at a computer and writing, for you know, 4 or 5 hours.
I feel terrible about that sometimes, because of that instilled sense that it's got to be somehow worse than that, you know.
And it's very difficult to shape but at least now I can be kind to myself. So yeah, I think you know the concept of work is well open to challenge, you know.
I think that that may well be the 21st Century's biggest task, you know, as we enter a world with all you know, artificial intelligence, of workforces of people who you know may not even have jobs to attend because you
know, they will gradually start to be taken, automated, and taken over by machines.
You know there is a conversation we have to have, you know, to recognize that actually work may well be a very different thing.
Now, you know, it may very well be something that is totally alien and totally different to to that Protestant work ethic.
It was instilled in our grandparents you know back in the early 20th Century. And that, I think, is something to think about, and I think that really has resonated with a lot of people based on what
I'm seeing in the chat right now with similar experiences, and really appreciate that.
And I just want to end by thanking all the panelists so much for being here tonight, for sharing your expertise and giving us your time.
This has been such an illuminating discussion. And thank you so much to the attendees as well, and I do hope
that you felt this was helpful. And I just want to reiterate that we will be sharing the recording with everyone who registered, and we'll be sharing it widely on social media
as well. So if you missed any part of this session, then don't worry.
You will be able to watch it. Thank you so much to everyone.
Thank you for having us.